After my laparoscopy I've been diagnosed with stage 4 endo. It was recommended I try zodalex injection. Has anyone had that and what were side effects for you ??
Zodalex: After my laparoscopy I've been... - Endometriosis UK
Zodalex
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Ncoowar
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I was diagnosed 7 years ago whilst trying to get pregnant with my now miracle 4 year old son. Havent had any symptoms until a year ago when everything started again. After referrals scans xrays bloods cameras in places you dont want to know i was finally referred back to gyne... they tried me on zolidex. I only had two injections when i was due to have my third i cancelled my appointment as it didnt help with the pain and i turned into an angry hormonal wreck. It is different in everybody but did not work at all for me. Im having a lap next friday and it cant come quick enough.
Good luck xx
Hi I have stage 4 also. Tried the tablets after my lap but they didn't work. Was advised to try the injection for a 9 month treatment. 6 months injections and 3 month off. I'm having my last injection Monday. For me I still have pain but I was told to try and stick it out as it may just work after my last one...... Will have to wait and see with that!
Side effects... They are not great but effect people differently. The main one for me is the hot flushes so I have a fan on my desk at work and blast my face when I need it! The injection puts your body through the menopause so you may get the same symptoms. It's has also messed with my emotions as you would expect with a hormone treatment.
To sum up it hasn't worked for me. I will end up with surgery but it was worth trying to save me going under the knife! Everyone is different so may work for you. I would advise the expect side effects and learn how to accept them and deal with them as your only going to have them for a short time.
Hope it does work. Good luck xx
I don't want want a hysterectomy so I'm probably gonna end up trying injection see what happens. The have tried Mirena and that doesn't seem to do anything but il try anything. Good luck to you and thank you for advice xx
I know people think that the only surgery is a hysterectomy but really you only need to get rid of the ovaries which cause the hormone release, often leaving the womb etc is better as it reduces risks of prolapse etc. I had zoladex for 3 X 6 month periods and a 2 year combo of zoladex and HRT (thin skin meant I had lots of tearing and bleeding just from my underwear rubbing) as I have stage 4 endo too and have had many laparotomies to remove cysts and also my appendix which was ruptured by endo. I'm currently under a wonderful endo specialist who has started me on prostap (due to issues recently with zoladex) whilst I wait for my date for ovaries removed! That 'should' be the end of it. I'm 31 with no children and due to rate of growth will never be able to have children, it was just hard to find someone who would do definitive surgery due to my age. I'm actually looking forward to it!
Hi I had Zoladex for six months prior to surgery. The first month was hell the second better, by the third I felt better than I had for a long time. It takes a few months to settle down before you get some relief. If you get the hot flushes try evening primrose oil and sage leaf tablets, one of each twice a day. I found they really helped. I also got headaches for a couple of days with every injection. Good luck and I hope you get some relief.
Thank you for reply I've got an appointment in two weeks I've tried everything I'm just so fed up of all of the constant pain. I might just give it a go xx
Hi. Just a different perspective. I've had 9 zoladeX injections now. It's been amazing for me. Switched off my pain completely and very little side effects. I think everyone is different and you won't know until you try it. Xx
Hi, I'm due my 2nd injection on Tuesday, so far, it hasn't helped at all with pain, side effects so far have been very sore boobs for about 2 week s, and head aches, I've never suffered with head aches, I'm on Estelle hrt, will you be on hrt, I'm very interested in this thread as I was going to ask under what circumstances zolodez don't work for xx
I don't agree that it's better than a full excision op, unfortunately it's only ever temporary, the gold standard of treatment is a thorough excision job complete d by a specialist at a bsge centre, zolodez will only mask the disease not help it, I'm on it purely for pain relief whilst awaiting a laparoscopy, after being diagnosed in march with endo and adeno, by a general gyne, he excised, but we believe he has missed some, I've also had a hysterectomy due to the adenomyosis, x
Had my 3rd Lap in Nov 2015, I resisted Zoladex first cause I'd heard not so good things about side effects, tried the 'softer option'- the Pill, but this didn't work and still had bleeding, so decided to try Zoladex. I'm on my 3rd injection now, first was late Jan. Symptoms are improving, first month was worst for headaches, emotional distress(felt a bit crazy with emotions all over the place- crying, angry) this has progressively settled. Have had hot flushes throughout the 3months. Just had my cholesterol checked and it's very high at 7.5, but I'm unsure whether Zoladex is to blame, but I believe it can increase cholesterol, but I'm trying to clean up my diet(I'm overweight and haven't been too good with diet, more due to depression from my 8 miscarriages over past 4.5yrs, I think). My bones and muscles have been quite achey since 6wks into treatment. I think it's made my depression a little worse over the first 2wks after getting the Zoladex implant each month. Bloodtests have shown my inflammation levels higher and possibly arthritis, but I don't know if this is related or unrelated to Zoladex... I think not. Symptoms will vary for everyone and I seriously considering stopping after the 1st month, but I'm glad I didn't, I think it's different for everyone. I will say that it's only after the 3rd injection that I haven't had any period bleeding. I had light period/spotting for prob 3-4days at the start of the first 2 injections. My Specialist said that was normal cause your hormones go up a little and are bought down, I don't know about this, I didn't think there was suppose to be any bleeding on Zoladex. Good luck with your decision, it was one I agonised over for 2months, but I wish I started Zoladex straight away after the surgery and not even bothered with the pill, cause I had so much pain and heavy bleeding that lasted over 2weeks, with the first period after surgery while on the Pill. I was advised that the first period after surgery would be unpredictable with pain & flow (heaviness?), just very unfortunate it came while I was trying to enjoy a much needed holiday with hubby. Good luck with your decision xx
Forgot to say, like you, I was diagnosed with Endo Stage IV
Hello! I have significant endometriosis which is affecting my left ureter. It has basically squashed it causing a blockage and now my left kidney is in trouble. Following surgery in February I am on a 6 month course of zoladex in an attempt to shrink the endo plaque around the ureter and then review to decide what to do next to help the kidney!! The ureter is stented in the mean time.
The first month after I started zoladex was difficult with no improvement in pain, headaches, hot flushes and night sweats. After my 2nd injection 2 weeks ago my pain has improved significantly. I am still getting the hot flushes and night sweats but following advice on here I can cope with these!! I am tired more than I have ever been but if it means I can give my kidney the best chance of some recovery I will stick it out!!
I am not planning to ask for HRT unless things get horrendous!! I have heard not so good things about HRT and I know what it did to my mum in terms of migraines and mood swings!!
I wish you all the best in your decision making. I have found reading posts on here invaluable to help me get through this! Good luck X
I'm in London. Yes significant endo found nothing could be done they fitted a coil. But they recommended zodalex.
I'm on my second month of zoladex and don't get on with it the pain has eased but not disappeared completely and I wake up every morning feeling ill and sometimes really struggle to get out of bed as I feel so exhausted. A specialist is definitely the way forward and that's what I'm doing. The injection is different for everyone though, good luck xx
Hi
I'm on my second zolodex.
My personal experience has been amazing .... I've more energy, painless etc ...... Touch wood !!!!!...I have not had any negative side effects
However, I do understand everyone is different
I'm waiting for my date for a hysterectomy for which I'm feeling quite nervous, but it will soon come and go and I will be on the mend.
Good luck :-))
